Hoping Against Hope: It’s a Funny Way to Thrive, But it Works

Hope: The feeling that something desired can be had or will happen. (from the Cambridge dictionary online)

A diagnosis of rheumatoid arthritis changes everything, most especially, the things we hope and dream about, the things we focus on. Before RA, you may hope to have the money to take a dream vacation overseas, now, with RA, forget the vacation, you hope for a day that you can get into the ocean as gracefully as possible without falling because of intense pain. Little dreams become big dreams, and things you used to hope for are moved to low on the list as they become less possible. Over the years that I’ve lived with JRA, I’ve had to be very careful with how I think about my hopes and dreams. If I aim too high, my hope quickly fades into hope against hope, and that can lead to a feeling of depression or hopelessness. I long ago decided hopelessness is not an option, because it is a guarantee that the disease has gotten the best of me and I won’t let that happen. But hope against hope, used skillfully, that I can work with.

Hope Against Hope:

To hope very strongly that something will happen although you know it is not likely. (from the Cambridge dictionary online)

It’s a delicate line to walk, because, as I said, putting too many eggs in the basket when you aim high, can easily lead to feelings of failure. The question becomes, how to aim high without wasting your precious energy or spending too much time on a useless endeavor. The answer for me has become, choose your hopes wisely, know when to act and when not to, and to keep a curious attitude; when it becomes discouraging or no longer fun, stop.

One hope I have is an obvious one: sustained remission, or the holy grail of RA. Over the years I’ve kept that hope alive although I’m not always actively pursuing it through action. The fire will always burn inside me, even if I never achieve it, but I know that, although slight, there is a chance for me. I’ve achieved short remissions in the past, and that tells me that it is possible. I have phases when I go all out and try new ideas, alternative and conventional treatments that seem to have promise. I once wrote to Dr. Jonathan Edwards in the early 2000’s when I was struggling badly and out of options. Dr. Edwards was the researcher who first proposed the idea that B-Cells in our body could be the culprit for RA, and turned that idea into Rituxan therapy. He graciously wrote me back and emboldened me to become one of the first people in this country to try it out and that decision led me to calming the fires; even though it didn’t burn them out completely, it brought me back to life in every way. At other times, I don’t take action, instead I keep my ears to the ground for new discoveries that could help me, and I conserve my energy as much as possible so that when the time comes for action, I’ll be ready.

I try to choose my hopes wisely, when I can, and often that means I ask myself- ” How important is this to me?” Right now I’m hoping against hope that I’ll get back on a mountain bike trail. Since I had a serious neck surgery last year it’s not looking good for me, but I know just how much I want this, so I think this is a good one to hold onto. But now isn’t the time to pursue this goal, as I’m still needing a lot more healing time. I’ve learned the hard way, time and again, what pushing too far and too soon will do to my body. Right now, I’m getting on a recumbent bike as much as my body lets me, so that when the day comes that my neck is strong enough to try out a dirt trail, my legs won’t hold me back. Another thing that JRA has taught me is that small steps, done with perseverance and with the long view in mind, make a huge difference in the outcome.

At times, pursing hopes can get discouraging, especially when they depend on my body cooperating, or revolve around quieting my disease. That’s when I give myself a break and move onto other things, hopes that are easier to attain; like hoping this year to see my best friend, who lives in another state. We are working together to make that happen and I know, even if the JRA becomes more active, I will see this one through.

Attitude is everything: Stay Curious

The best way I’ve found to keep hope alive is to stay curious. The world as we know it is always changing and there is so much to learn. Keeping a curious mindset helps me to open myself up to new ideas and new ways to think about problems. It also leads me to positive action. In doing something, trying new things, greater understanding will always happen, and that’s never a bad thing. I’ve heard that the destination is rarely as important as what happens along the way, so I try to stay positive, and doing something, anything, with the right mindset often leads to new ideas and new directions to try that I wouldn’t have thought of otherwise. Curiosity may have killed that cat but it keeps me alive.

So, in this new year, think about your hopes and dreams. Choose wisely, but don’t be afraid to aim high. Have fun in pursuing them, and if you get discouraged, don’t worry, they will always be there for you. Stay curious, and take positive action when you have the energy to do so. And have a beautiful 2018!

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Comments

Thank you for sharing your hopes with us , Kat. I started Rituximab treatment almost four months ago after trying all TNF inhibitors approved for Ankylosing Spondylitis. I am finally having (somewhat) sustained remission from my eye inflammation (Scleritis) which has been very painful and led me to early retirement. I miss good health and work badly, but I also blame RD for difficulties I’ve had with relationships. But that’s another story. Hope was my lifeline through all my treatment failures. And my rheumatologist was very helpful in this regard. He seemed to always have another pharmaceutical for me to try when he would declare one wasn’t working for me. But he only had one drug for my eye flares; prednisone. And that caused glaucoma and osteopenia. Diet and natural options for me had already proven been exhausted. So I tried a took a break from pharmaceuticals. At first I improved as the side effects of drugs had been bad. But my scleritis worsened and my ophthalmologist insisted that I get systemic treatment going again. That’s when a new rheumatologist suggested Rituximab. I caught the flu after my second induction dose, and that was six weeks of misery. As I recovered, my strength returned and the eye cleared up. Hope got me through a very rough patch Kat. But your trailblazing efforts with Dr Edwards may have opened the path for the treatment that tamed my scleritis, and I thank you for that.

Thanks Tich for sharing your story, sounds like you’ve had quite the journey too! So glad you are doing better and that you never gave up on hope 🙂 Relationships are tough to begin with, adding a layer of chronic illness sure doesn’t simplify things. A few of us advocates have shared some of our relationship issues, if you are looking for ideas/support around that keep looking on the site- Take Care!

Kat, most important? Laugh, a lot. I hope you get back on the mountain trail and I believe you will. But even if not, keep laughing and for every set back laugh longer and louder. Today I was laughing so hard, and loud when Sheryl remarked I must be hurting. Yes I said. How can you tell I asked? You are laughing too loud. Yeah after 40 years she knows me pretty well.

I tell my husband I married him because he makes me laugh every day. It also helps that I have the goofiest dog in the world- I swear he is part cartoon character! Thanks for reminding me that laughter is the best medicine ❤️